flare?

[vdub]

I don't think I can chalk-up my aches and pains to old age anymore. It just doesn't add up that someone 60 years old should feel as bad as I do and be able to do so very little without a 2 or 3 day penalty.

If I do nothing, that is, watch tv, be on the computer, normal walking around the house, or even drive to the store and pick up a few items, then I feel pretty good.

But, if I do anything else that might be considered moderately strenuous, then I pay dearly. For instance, I walked to my hospital the other day (2.5 miles round trip, all flat) and my knees, shoulders, arms, and tail bone have been aching to the point where I can't sleep. I have been on a regimen of tramadol for 2 years, but for periods like the one I'm in now, I have to dig into my stash of oxy. Even with the oxy, the pain is still there, but only as an annoyance.

So my question is "are these pains from wegener's"? Are these types of aches and pains typical wegener's behavior? I have no idea what a flare would be like.

I don't think it's my pituitary condtion, but it could be from my psoriatic arthritis. I have so much stuff going on that I'm hoping you guys who have wegener's and don't have other distractions can help me determine what the cause might be.

My VA doc told me last week that I should be on a more aggressive pain management plan. I figure she sees more pain issues than most docs, but I don't know what the next step in pain management is. I'm not sure I want to become a legal junkie, but I suppose that is the next step.

Oh, yeah, one other thing -- If any of you are on aggressive pain management, was your driver's license revoked?

I think I'll make an appt with my PCP on Monday, but I don't see my rheumy until mid-Aug.

[renidrag]

Sorry to hear this vdub. I only had lung involvement and still are in drug free remission. However, like you if I try to do anything remotely "strenuous" it is a two to three day penalty. As you, my strength is in watching tv, computer. and normal walking. Still there are days where for no apparent reason there is a little man hiding behind my kneecaps with a knife poking on every step. Lasts for most of the day then won't reappear for a while, or not. It now is the neuropathy that takes its toll more than wg, I still consider myself in remission and like you would not know how to recognize a flare.
Dale

[vdub]

Yeap, you described it pretty well. I also have the guy poking my knee caps. It's got to be more than age. Are you on any pain drugs?

[renidrag]

No, was given something for back pain, but decided not to take it, mainly because of Warfarin. My pain is mainly in my lungs after a long day with no inhaler, after the symbicort back to normal. I really dislike meds although I do take a small dose of Xanax. As far as being sixty, as I am also, I did a real number on my body in the plumbing industry and expect not to move as well as others, but wg has put me over the top.
Dale

[vdub]

Kind of sounds like my issues might be wegs related, then.

I keep thinking that I'm going to get back to normal and I hang on to my backpacks, old tractors, and all the stuff I've gathered for various projects. But, I'm slowly coming to the realization that those days aren't going to return....

[pberggren1]

I sure hope you are not flaring vdub.

If it were me I'd be calling the doc at SLC.

[vdub]

I'm going to wait until Monday. I can probably see my PCP Monday morning and I'll see if he can confer with one or the other of my rheumys. In the meantime, I'm "managing". I'm a little surprised that the oxycodone isn't doing a better job of knocking down the pain.

[Sangye]

vdub, that is not normal aging. It's similar to what I have always experienced, though, remission or not. It's kept me from making any progress with exercise or daily activities.

It's very hard to tell if it's a flare or not. If you're feeling well otherwise and the pain patterns are consistent over time then it probably isn't. The fact that the pain comes on following activity means it's inflammatory. Are your most recent inflammatory markers within range?

You might want to keep track of everything you eat and drink to see if there's something causing increased inflammation. I know that if I eat dairy for several days in a row I have much more global pain. Spicy foods do that too due to an increase in the Fire element.

Also, try adding fish oil to your supplements. I take 3,000 mg a day and am surprised at the difference it makes in overall inflammation.

[pberggren1]

Sangye, I also take fish oil capsules. My bottle says it has 1000mg of fish oil and also 400mg of EPA and 200mg of DHA. Is yours similar to this? I take 3 of these capsules a day.

[Sangye]

Yeah, they're all pretty much the same in terms of ingredients. They do differ greatly in terms of quality though. Make sure you get one that tests for heavy metals in every batch.

[pberggren1]

Mine says on the box that they test for heavy metals in each batch.

[vdub]

Fish oil, eh? I'm going to have to give that a try....

I'm pretty sure anything beyond moderate activity is out of the question for me now. I can still go and do strenuous stuff, but I pay dearly for it later, so it has to be worth it.

[KenL]

Greetings to vdud and all,
Although I am currently in no pain, I have also lost my ability to do anything more strenuous than slow walking for very short distant. Anything above that and I am extremely short-of-breath and have to sit down and relax for a few minutes. I have been in remission for a short period of time and have started Azathioprine as the maintenance drug. Also remain on 20mg Prednisone which I should start the “weaning process” next month.
It’s strange but approx. 2 months ago I was able to walk 1 ½ miles without too much trouble. How I have to force myself to walk ½ mile and then I start getting short of breath. At first I blamed this on Cyclophosphamide but now am off it and still have this extreme fatigue condition. Do you think the Prednisone could be causing it or is simply the WG?
Of course, the Dr. keeps saying to get more exercise. Awful hard to exercise when you get so short of breath that you sometimes feel like passing out. As I stated before, at least I am currently pain free as compared to so many WG’s.
Ken

[vdub]

It's not the pred, Ken.... Pred does just the opposite -- keeps you wide awake, hungry, and feeling pretty decent. I thought it was the greatest drug in the world when I had my first few doses of it. Then, I started getting the weight gains, moon face, etc. Once I put on "pred weight", it's there forever.

My endo wants me to do more walking, but she sometimes forgets that I have wegs. My rheumy sometimes forgets that I don't have a pit. Sometimes I get conflicting drugs. Just recently I had one doc put me on a drug and another take me off of it. That actually happens quite a bit -- I have 4 docs on my active team and another 3 consulting docs....

[Sangye]

Greetings to vdud and all,
Although I am currently in no pain, I have also lost my ability to do anything more strenuous than slow walking for very short distant. Anything above that and I am extremely short-of-breath and have to sit down and relax for a few minutes. I have been in remission for a short period of time and have started Azathioprine as the maintenance drug. Also remain on 20mg Prednisone which I should start the “weaning process” next month.
It’s strange but approx. 2 months ago I was able to walk 1 ½ miles without too much trouble. How I have to force myself to walk ½ mile and then I start getting short of breath. At first I blamed this on Cyclophosphamide but now am off it and still have this extreme fatigue condition. Do you think the Prednisone could be causing it or is simply the WG?
Of course, the Dr. keeps saying to get more exercise. Awful hard to exercise when you get so short of breath that you sometimes feel like passing out. As I stated before, at least I am currently pain free as compared to so many WG’s.
Ken
Ken, has your doctor checked your lungs more thoroughly, as in a CT scan? Increasing shortness of breath is concerning. If your lungs are okay, you might be having trouble higher up, in the trachea or subglottal area.

[Sangye]

It's not the pred, Ken.... Pred does just the opposite -- keeps you wide awake, hungry, and feeling pretty decent. I thought it was the greatest drug in the world when I had my first few doses of it. Then, I started getting the weight gains, moon face, etc. Once I put on "pred weight", it's there forever.

My endo wants me to do more walking, but she sometimes forgets that I have wegs. My rheumy sometimes forgets that I don't have a pit. Sometimes I get conflicting drugs. Just recently I had one doc put me on a drug and another take me off of it. That actually happens quite a bit -- I have 4 docs on my active team and another 3 consulting docs....
Pred has the opposite effect on me-- the higher the dose, the weaker I get.

Do you have access to a pool? I find I can do so much more in the water without pain during or afterwards, even if I'm not strong enough to swim yet.

[Dirty Don]

Pred has the opposite effect on me-- the higher the dose, the weaker I get.

Same here, as well as on codeine...people get sleepy, I get wired. I also slept well enough on high pred doses, but the dreams were incredibly vivid!! All the more reason to keep track/log your drug usage and effects. Now if I could have the opposite reaction to FAT gain instead of muscle loss!!

[vdub]

I'm surprised at the varied reactions to pred. I had no idea people reacted so differently to it. I guess we all gain weight, tho.

Fortunately, I have almost no side-effects from codiene other than feeling pretty good.


FAT gain instead of muscle loss!!
I'm on human growth hormone now. Supposedly, I should regain some of my muscle mass, but I doubt that will happen -- no exercise = no muscles. And, I've hit the wall on pain, so excercise, at the moment, is pretty much out of the question. It's getting tough to just walk 100 yds to get the mail.

On the brighter side.... I can still tow my RV and travel around the country, so it could be worse.

[KenL]

Sangye, I had a chest x-ray recently which did not show any visible problems. However, during the review of the chest x-ray he did indicate that a chest CT scan may be the next item if the shortness of breath continues. It’s not only shortness of breath but I become dizzy for a few seconds after standing up from the setting or knelling position.
Thanks for the inputs.
Ken

[mishb]

Sangye, I had a chest x-ray recently which did not show any visible problems. However, during the review of the chest x-ray he did indicate that a chest CT scan may be the next item if the shortness of breath continues. It’s not only shortness of breath but I become dizzy for a few seconds after standing up from the setting or knelling position.
Thanks for the inputs.
Ken


I cannot kneel down at all. As soon as I stand up from a kneeling position, I become dizzy (like you) or very light headed, therefore the easiest solutions was not to kneel......sitting is fine, but I do way too much of that..... LOL.

I have always put my joint pain down to my RA but maybe it is the WG. The pred doesn't seem to help it much.......well that's not quite true. When I first started pred my joints felt like they had been slammed in a car door. I thought pred was some miracle drug, my joints still had pain but only enough to feel it each day and not be in actual pain. The reduction in pred to 5mg has not changed the aches in anyway, they are still exactly the same as when I was on 20mg....not pain painful, but there none the less.

I see my rheumy in the morning so I will ask about the difference. Hopefully my bloodwork will show some improvement and I can decrease pred a little further.

[Sangye]

Same here, as well as on codeine...people get sleepy, I get wired. I also slept well enough on high pred doses, but the dreams were incredibly vivid!! All the more reason to keep track/log your drug usage and effects. Now if I could have the opposite reaction to FAT gain instead of muscle loss!!
I had that paradoxical reaction to benadryl (ie, it made me wired instead of sleepy) but it actually has reversed! Now it knocks me out. Paradoxical reactions are common with benadryl and several other drugs.

I didn't sleep well on high dose pred in those early days. Though it weakens me terribly, it does make my mind race and keep me awake. For some reason though, when I was on high dose pred again in 2010 it didn't keep me awake. Bizarre drug.

[Sangye]

Sangye, I had a chest x-ray recently which did not show any visible problems. However, during the review of the chest x-ray he did indicate that a chest CT scan may be the next item if the shortness of breath continues. It’s not only shortness of breath but I become dizzy for a few seconds after standing up from the setting or knelling position.
Thanks for the inputs.
Ken

Dizziness after standing up is most likely an adrenal thing. Adrenals help regulate blood pressure changes, so if they're weakened there is a lag in that regulation. This is fairly common, even among people who haven't been on pred, since adrenal depletion is rampant in modern times. However, they should definitely be checking this out.

When is the last time they did an echo of your heart? Wegs involvement in the heart is not common but it is often silent until damage is done. A heart issue could account for both those symptoms. It's an inexpensive, non-invasive test that should be done on a very regular basis.

[drz]

Greetings to vdud and all,
Although I am currently in no pain, I have also lost my ability to do anything more strenuous than slow walking for very short distant. Anything above that and I am extremely short-of-breath and have to sit down and relax for a few minutes. I have been in remission for a short period of time and have started Azathioprine as the maintenance drug. Also remain on 20mg Prednisone which I should start the “weaning process” next month.
It’s strange but approx. 2 months ago I was able to walk 1 ½ miles without too much trouble. How I have to force myself to walk ½ mile and then I start getting short of breath. At first I blamed this on Cyclophosphamide but now am off it and still have this extreme fatigue condition. Do you think the Prednisone could be causing it or is simply the WG?
Of course, the Dr. keeps saying to get more exercise. Awful hard to exercise when you get so short of breath that you sometimes feel like passing out. As I stated before, at least I am currently pain free as compared to so many WG’s.
Ken

Pred can cause delusionsns of adequacy. Have you decreased your pred meds in past two months? I found pulmonary rehab really helped with my shortness of breath and increased my endurance a lot. How is your blood pressure and O2 levels?

[Dirty Don]

Pred can cause delusionsns of adequacy.

Jeez, I don't need pred for that...does that mean I can cut down more now!? Sorry, I see humor in everything...even if it is a little shady...hehe.

[Sangye]

ROTFL drz. :laugh: